I have Sturge-Weber syndrome and a birthmark that covers 50% of my face and body, including inside my mouth. I had surgery for very serious epilepsy as a baby and because of that I can’t use my right arm, move my right foot or see on the right side.
I have always known that I look different. I didn’t think much of it when I was younger; no one else really cared when we were young. However in high school you have to fit in, you have to look the same, and if you don’t then people will make a fuss.
I don’t have many friends, just one or two. I had a best friend but she left school, so I was by myself for about a year. I once heard a person had been saying stuff behind my back, calling me ‘a purple monster’, and asking one of my friends, “why are you hanging out with that purple monster”. And in PE I am always the last person to get picked for teams.
My visible difference has affected me quite a lot because everyone stares. Quite a lot of people ask “why do your teeth stick out” – they always notice my teeth first – which is because my birthmark is in my mouth too. When people ask these questions I often don’t really know what to say, sometimes I ignore it or just say “that’s how I am”. I feel annoyed in those moments, I don’t want to be stared at all the time.
My dad told me a few weeks ago that when I was a baby he also would get really annoyed at people looking at me. I would say my parents are protective, but now none of us even react to any staring or comments if they happen.
As always, if I need to talk about anything I go to my mum or dad. I sometimes mention it to my best friend too for reassurance and advice. I joined the Youth Action Group as I want to improve my confidence around speaking in public and to meet other young people who have a visible difference too.
People should not judge me by what I look like; I should be treated the same as everyone else. My advice to others with visible differences is to try not to take what people say personally.